Wednesday, August 28, 2013

Do you all remember how I had to take a break from working out because of my broken arm back in January? And then how it healed just in time for me to have my expanders swapped out for implants in March? And who could forget my surgery incision opening up just four weeks after that??

I finally got clearance to return to exercise near the end of June, which means I spent HALF of 2013 recovering from one injury or another.

It was one long string of sitting on my ass, is what it was.

I know how lucky I am that I even have the desire to exercise, let alone the ability. After what I went through the first half of this year, I don't take that for granted. I have metastatic breast cancer; there are a lot of people who get so sidelined by this disease and the drugs required to keep it at bay--through no fault of their own--that exercise is the last thing on their minds. I am lucky that my metastases are small and confined to my lymphatic system. I am lucky that all of my side effects have been related to chemo, not cancer itself. I am lucky that, for now, the chemo I'm on has relatively few physical side effects.

It's amazing what you find to be thrilled about when you have cancer.

Since the end of June, I've been trying to get back in shape, walking here and there (although not as much as I should, since I signed up for this Avon Walk and 39.3 miles is no joke, but neither is summer in Phoenix, so I'm picking my battles) and going to yoga a couple times a week. I'm getting stronger, but my body is different than it was pre-cancer.

That might be the understatement of this entire blog.

This is a work-in-progress. My goal is not just to get in shape for the sake of my cardiovascular and mental health, not just to strengthen my muscles and increase my stamina, but also to stretch out scar tissue, figure out how to re-train chest muscles that have been pulled and shaped in ways they were never naturally meant to go, and prove to myself that my body is still capable--capable of hiking a mountain at 6 a.m., of keeping up with a toddler, of finding stillness and peace while completing a series of sometimes uncomfortable poses in a heated room, of walking a marathon and a half over two days to raise money so that maybe, someday we can end this terrible disease that accounts for nearly twenty-five percent of cancers in women.

I'm planning on walking a half-marathon this weekend with my good friend (and fellow Avon walker) Ginelle. Last weekend, I went on a two-hour hike with a couple of otherfriends who are also walking with me in San Francisco next month. Today, I'm going to try to hold a handstand in yoga for more than a half second.

My disability claim was probably just revoked, but I promise doing handstands has nothing to do with my abilities as a lawyer.

I don't exercise every day. Some days I'm too exhausted or my head hurts too terribly. But on a daily basis, I'm trying to prove to myself that I am capable of living with cancer. Exercise helps me with that. Sitting on my ass for extended periods does not.

Thursday, August 22, 2013

I've been a little off lately, I know. I've had this anniversary and yesterday's scans on my mind, not to mention a possible new preschool for Quinn and managing disability insurance and student loans and the fact that my brother who we just visited in Alaska is leaving for Afghanistan in the spring, so it'll be awhile before I see him again.

And then Tuesday, as I was waiting in the dark, curtained-off alcove for my PET scan... Side note: have I explained how these things work? First, you have to fast for four hours, and my blood sugar always dips into the "Are you sure you're feeling okay, honey?" territory. Last time, the tech asked me if I was diabetic. I'm not. I had chemo on Monday, so I'm already prone to headaches and nausea. Not eating doesn't help. Ask any pregnant lady.

After I check in, the nurses show me to a recliner set into an alcove in the hallway. Once I'm comfortable, they access my port, the large, wart-looking thing right above my left boob. By "access," I mean they stick a needle into it to draw blood and inject me with a radioactive glucose. My fasting-starved cells eat the sugar up, and any cancer cells will eat it up faster than normal cells, thereby giving the radiologists a picture of what's going on inside me, cancer-wise.

It takes about forty-five minutes for the isotope to travel through my bloodstream, which is time I spend reclining in the dark alcove. Theoretically, it could be naptime, but I'm too anxious to nap. Every twenty minutes or so I can hear them opening the curtain for another nearby patient signaling it's time for him or her to get scanned. I want to vomit, but there's nothing in my stomach.

It seemed to be taking an especially long time for the technician to come get me. I was getting anxious. Even more anxious than usual. Finally, she came over. "Down the hall. Go ahead and empty your bladder," she told me.

I went to the bathroom, and then came back to my empty seat and waited. And waited. An electrician carted his cart by. The receptionist shuffled past to go back to her station. Machines whirled behind closed doors. I waited some more.

After what seemed like an eternity, the technician came back to me and explained, "I'm sorry, it's going to be another six minutes or so. I saw something on this woman's scan, and I need to make sure I rescan it to get good images." I felt bile rising in the back of my throat. I was next, and here the technician was telling me there was a tumor in the woman right before me. I'm pretty sure that violated all kinds of HIPAA regulations, but it also broke my heart for her and scared the hell out of me at the same time.

Six minutes must have passed. An aide wheeled the woman with the tumor past me, down the hallway. She had oxygen tubes coming out of her nostrils, helping her breathe. She was completely bald. I started crying.

During my scan, I tried to imagine clean cells. I told myself I'm healthy. I thought of my childhood, of lying on the beach in Hawaii when I was five and loving the feeling of the warmth of the sun. I thought of Quinn.

Toward the end of my twenty minutes on the machine, I could see the technician leave the room out of the corner of my eye. Immediately I started panicking. Was she was off to tell the next person in line that she'd seen something on my scan and would be a few more minutes? Tears were streaming into my ears.

And then, before I knew it, she was back, lowering the table, telling me my scan was over, sending me on my way.

I met with my oncologist yesterday to get my results, and--although my scan wasn't squeaky clean--he was pleased. The drugs are working. And for another couple of months, I no longer feel like I'm going to throw up.

Monday, August 19, 2013

Two years ago I was told those dreadful words: you have cancer. Our lives changed pretty dramatically on that day and over the next couple of weeks as we learned the extent of what we were facing. To say it has been a roller coaster couple of years is putting it lightly. It's like we've been on a rickety wooden roller coaster without any safety constraints. But we're still holding on. And occasionally it's even fun (as roller coasters and life tend to be).

In the past two years, I've been bald twice, endured four surgeries and countless gallons of medicine pumped into my bloodstream. I've lost my fertility and my eyebrows. And my breasts. I've raised nearly $20,000 for the Avon Foundation for Women to fight breast cancer and I've met some pretty incredible people who probably wouldn't be in my life but for cancer. So it hasn't been all terrible.

That doesn't mean I don't still cry when I hear about a friend's colleague who was just diagnosed with leukemia and has to spend five weeks at a time hospitalized and away from her young children. Or when a woman one friend described as our "cancer-land ambassador" entered hospice last week. I cry more now than I ever did pre-cancer.

I've learned a little about empathy over the past twenty-four months. I've also learned that it's okay to experience all these emotions, so long as I can find my way out of them pretty quickly. So long as I don't linger in the fear, the grief, the sadness.

I've also learned that living with incurable cancer means we've never quite arrived at the “new normal” that people talk about post-treatment. I still have scans every three months (in fact, I have a PET scan and a brain MRI tomorrow. Fingers crossed, please.) I still come in for treatment every three weeks. I still think about cancer more days than not.

On the other hand, life goes on, and it's better if you join in on it rather than swim around in your own head full of anxieties and dread. Those can get to be awfully dark waters--at least in my head--and it can feel like you're drowning in them.

My boys are my lifesavers. They pull me out of those dark places every time. When I whine to Chris that I'll never get to wake up again without cancer in my life, he says: "But you get to wake up again."

Speaking of life going on, of getting out of my head, of going to a place that just about never gets dark, at least not this time of year, we just spent a week visiting my brother and his family in Fairbanks, Alaska.

We took the train into Denali, which just about blew Quinn's mind.

We spent a significant amount of time outside, which always makes me feel more alive.

Quinn approved of the cabins.

That's my brother and nephew, on the left. My boys on the right. Good looking crew, no?

And this is the view out my brother's window at 11:45 p.m. Yep, almost midnight and the sun was just setting.

On the way home from Alaska, we stopped in northern California to check in on my mother-in-law. At her house yesterday, I stumbled across an AARP magazine and an article about a woman who was diagnosed with Stage IV gallbladder cancer and given three months to live. That was more than five years ago. She is thriving today. Doctors can't quite explain it. The woman said she lives by a line in Lance Armstrong's book It's Not About the Bike that goes something like: "If you can move, you're not sick."

Physically, most days, I don't feel sick. Two years in, and we're still moving. Here's to many, many more cancerversaries.

Monday, August 5, 2013

As I was putting him to bed last night, Quinn turned to me and said, "I so sad, mama."

"Why, buddy? What's going on?" I asked. "What are you sad about?" He was holding my hand, and curled his whole body around my arm.

"I sad Sydney go bye-bye," he responded. We'd had dinner with his friend, Sydney, and her parents the night before. At one point, Quinn hugged her so hard that she toppled off the little wall she'd been sitting on to the ground below. Luckily, it was dirt and her crying was short-lived. They've been friends since before either of them could walk, and Quinn adores her.

"You'll see Sydney tomorrow," I tried to comfort him. He's still in daycare (with Sydney) a couple of days a week, so I can go get my weekly lab work done, and catch up on laundry and emails and sleep.

"It's okay to be sad sometimes," I continued, "but that's when we have to remember what makes us happy, too." We listed out all the fun things we'd done this weekend, Quinn's friends that we'd seen, and the new scooter Chris had just assembled for him.

Quinn seemed fine this morning, but the incident got me thinking: is my sadness rubbing off on the little guy?

For the most part, I try to keep my thoughts here upbeat. Because, for the most part, I'm an optimist. I'm hopeful. I'm able to remember that I'm here now, and that's enough. That hasn't been the case this past week, though. This week has been hard.

Some of it is the treatment-fueled exhaustion -- that even after eight full hours of sleep, my limbs feel like concrete, my head feels like it's in a vice, and I struggle to get out of bed, even when Quinn is asking me to come play trains with him. Steroids don't help.

Some of it is that parenting is hard. I love Quinn more than anything in the world, but I lose my patience when it's 108 outside and he refuses to get in his carseat, throws a complete tantrum in a hot parking lot somewhere. That is not the time when my toddler negotiating tactics shine. Instead, I yell at him to get in the damn car before I take all of his trains away, and then we both end up crying. I texted Chris last week: "What if I die and this is all he remembers?"

Chris told me I was being ridiculous.

I took advantage of Quinn napping on Saturday to take a nap of my own. About an hour into it, Quinn climbed onto my bed and gave me a hug, letting me know he was awake. Then he took off to go play with Chris, and I fell back into a light sleep for another hour or so. I could hear them chatting in the other room, getting ready to go out into the pool, and I couldn't summon the energy to lift my head off the pillow. I had the distinct thought then that my boys might be okay if I didn't wake up at all.

This is so hard to even admit. Fuck you for this, cancer.

Later in the weekend, Chris and I were trying to organize old photos, to get them out of piles on our office floor, to finally finish moving into our home. Looking at photos of ourselves pre-cancer, I got nostalgic for how carefree our lives were, for a time when I didn't worry that every ache might be cancer sprouting up again, for my old body and long hair and making plans more than a few months in advance.

I'm trying to take my own advice and remember all the things I have to be grateful for, but some days I am overwhelmed with the grief of this disease. Some days, this is hard.

Thursday, August 1, 2013

My nurses still administer them to me with every dose of chemo, a preventative measure to stave off side effects like nausea. They also stave off sleep, leaving me buzzing well past midnight, which is too damn late for this old lady. You'd think rest would be a good thing, right? But the steroids, they will not allow it.

Instead, I lay in bed Monday night, exhausted but unable to sleep.

And as usual when insomnia strikes, my head started going to scary places. Damn you steroids and your potential for inducing mood swings. I wondered whether this chemo is working, what my scans later this month will show, how much of this period of our lives Quinn will remember. I looked over at Chris, sleeping soundly next to me, as I approached near panic with the shitstorm racing through my head. Quinn is finally sleeping in his own bed and suddenly, I had to have my family all in one place.

So I did the exact opposite of what any parenting book would tell you to do (especially after the sleepwoes our household has experienced this year).

Just as we got back to my bed, Q woke up briefly to yell out, "I no want my blanket!"which woke Chris, who wondered what the hell was going on. I told him I'd explain in the morning. He persisted. "Are you okay?" he asked.

"No," I admitted. "But I'll explain in the morning," I whisper-yelled. I didn't want to wake Quinn up. Chris probably thought I'd lost my mind, but I just wanted to snuggle in close to both my boys, breathe in the scent of them, hold their hands as the steroids finally lost out to sleep.

Unlike my previous courses of chemo, I don't have to take three days' worth of this crap with each infusion, so you'd think my craziness and insomnia would have less staying power. Somehow, the steroids still stick around in my system for a couple of days, and while I'm sure they're good for something, they mostly turn me into a blubbering mess of worry, compounded by exhaustion.

Just to top it all off (as if crazy train over here wasn't enough), they also cause major breakouts. It's like I'm going through puberty again, which wasn't awesome the first time around.

Tonight, I fell asleep on Quinn's floor while putting him to sleep. Chris had to wake me up to come eat dinner. Three days post-chemo, and the exhaustion has caught up with me. I have a feeling I'm going to sleep like a baby tonight and feel like a brand new person tomorrow morning. Take that, unhappy pills.

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.